Board of Directors
The Foundation for Ichthyosis and Related Skin Types, Inc.® (FIRST) is governed by a volunteer Board of Directors dedicated to supporting our mission with their time and talents. FIRST's Board members are active participants in the various activities of the Foundation and are representative of our diverse population locally and nationally.
The 15-member Board of Directors has included individuals affected by various forms of ichthyosis, parents of affected children, dermatologists and researchers in the field of ichthyosis, as well as attorneys, educators, psychologists and corporate individuals. FIRST has been fortunate to have nationally known dermatologists, including a past president of the American Academy of Dermatology, sit on its board. The Board of Directors meet quarterly via Zoom, at the biennial National Conference, and also at a biennial retreat in Philadelphia during non-conference years. The Board is responsible for monitoring the results of FIRST's operations and supports the achievement of FIRST's ambitious strategic goals through standing, special (or ad hoc) and advisory committees.
Individuals who would like to express an interest in serving on FIRST's Board of Directors should contact theBoard Development Committee for more information.
2022 FIRST Board of Directors
Owner/President, Mr. Handyman of Northern Baltimore County
Parent of affected daughter
I got involved to help support FIRST. My family and I have found FIRST to be such a wonderful and passionate community that provides vital resources, support and connections to our members. As we move forward, I am enthusiastic about ensuring FIRST is a well functioning organization that is positioned to serve and support all of our members both now and in the future.
Owner and Private Music Teacher | Grace Notes Studio
Parent of affected daughter
Bailey did not have a derm growing up, so we have learned all that we know from FIRST and its members. We felt compelled to give back. We have been advocates and fundraisers for 36 years because I felt, “If we don’t do this, who will?” I want to ensure that FIRST will still exist to help other affected individuals and their families in the future.
1st Vice Chair
Regional Sales Manager, Keystone Custom Homes
Parent of affected daughter
2nd Vice Chair
Deputy Controller at City of Fishers
Chief Operational Risk Officer, Santander US
As an affected individual I know first-hand the importance of having a strong and active community to provide support to all affected individuals. FIRST plays an essential role in bringing the community together and I am fortunate to be able to support the organization in furthering that mission.
Sarah Asch, MD
North Oaks, Minnesota
Pediatric Dermatologist, Hometown Pediatric Dermatology, PLLC
As a physician who helps care for people affected by rare diseases, I know that the richest and best conversations are between families with similar challenges. FIRST facilitates these meaningful interactions and has matured into a place of support, education and advocacy that is driven most by people who share the lived experience of life with ichthyosis. I love working with FIRST in that it brings me back to my roots of what brought me into medicine in the first place, the ability to help translate medicine into English, and use my acquired knowledge to assist people to achieve their desired goals in quality of life. I am honored to support FIRST’s mission by serving on the Board.
Overland Park, KS
Work Comp Renewal Manager, Risk Innovations
I am an individual with ichthyosis. I am involved with FIRST to support individuals and families affected by ichthyosis. The first time I met others affected with ichthyosis outside of my family member, I felt like I found an additional family. That feeling has led me to want to be a part of the FIRST organization to help others affected by ichthyosis and welcome them to the family.
Latanya Benjamin, MD, FAAD, FAAP
Keith Choate, MD, PhD
Yale University: Professor of Dermatology, Genetics, and Pathology
Associate Dean for Physician Scientist Development
I have had a long dedication to understanding the biologic basis of ichthyosis with the goal of developing new therapies. I care for individuals with ichthyosis in clinical practice. I am the principal investigator of the National Registry For Ichthyosis and Related Skin Types.
West Caldwell, New Jersey
Director of Marketing, Pinnacle Promotions
Parent of affected daughter and son
I am the proud mother of 2 incredible children, Portia and Myles, that were born with ichthyosis en confetti. FIRST has meant so much to us over the years in terms of support, resources and community. I wanted to be able to give back and help younger parents as I was helped as a new parent.
Brittany Craiglow, MD
Biopharmaceutical Sales and Marketing, Sage Therapeutics
Parent of affected daughter
FIRST has been a tremendous support to our family from our daughter’s diagnosis to finding ongoing support from a giving community. From a biopharmaceutical perspective, many affected patients go to great depths to find therapeutic solutions for their set of symptoms. To date there are not any specific therapies that are specifically FDA indicted for Ichthyosis. By partnering with the biotech industry that focuses on rare diseases and conditions may help forge new research pathways that are relevant to our Ichthyosis community.
Music & Library Teacher at Rhema Christian School Motivational Speaker
I was born with ichthyosis and very early on my grandma and mom were heavily involved in raising awareness about my skin and fundraising for FIRST, so I just fell into their footsteps. But the year I was really impacted with all that FIRST means to me was the Denver conference. I realized that I had an entire younger generation looking up to me and from that moment forward, I’ve done everything I can to give back to this organization to help those kids. I want them to be more confident and stronger than I was at their age, to encourage them that they can lead regular lives, and to show them that they can chase after their dreams.
Bulk Customer Representative, Pepsi Beverages Company
I want to help the affected who feel alienated and alone. I say this because I felt that way for a long time. I personally never met another affected individual until I was 41 years old. So, for 41 years I never felt as if anyone else was like me, could truly understand me, understand my perspective, or the things that I went through in my daily life. In short, I never really fit in. No matter how close someone was to me, it still felt as if there were some major disconnects in the relationship. But after joining FIRST; after I began to get involved; and after I opened myself up to the idea that there were people who can understand me, I began to recognize that there was actually an entire community full of people who did understand because they experienced many of the things that I did. The more I got involved, the more I began to change my perspective about some things in my life. It is my hope to help others who might feel that way. I want to help them realize that they are part of the community also. I believe that as a community we must support each other. I’m going to do as much as I can to make that happen.
Daniel J. Siegel, Esq.
Principal, Law Offices of Daniel J. Siegel, LLC
Parent of affected sons
I discovered and joined FIRST after both of my sons were diagnosed with X-linked ichthyosis. Shortly after joining, FIRST contacted me in 1997 and asked me if I would consider becoming counsel to the organization, an offer I accepted. Since 1997, I have served as FIRST's general counsel without compensation.
Board Members Emeriti
Philip Fleckman, MD
Professor of Medicine (Dermatology), University of Washington
How the epidermis forms its barrier has been a focus of research, so when Leonard Milstone invited me to join the MSAB it was a natural fit. The biennial national meeting in San Diego in the early 1990’s was life-changing; from interesting diseases to amazing people. I bought in to FIRST and have never looked back. Helping FIRST has been an honor and a privilege.
Leonard M. Milstone, MD
New Haven, Connecticut
Professor Emeritus, Yale University
Amy Paller, MS, MD
Walter J. Hamlin Professor and Chair, Department of Dermatology; Professor of Pediatrics; Director, Skin Disease Research Center, Northwestern University Feinberg School of Medicine,
My passion is genetic skin conditions (my Masters degree is in genetics, I trained in both Pediatrics and Dermatology, and my postdoctoral fellowship was focused on genodermatosis research. I have been on the MSAB for more than 25 years and continue to focus on ichthyosis at the center of my clinical and research work.
David Scholl, PhD
grandfather of affected individual
Mary L. Williams, MD
San Francisco, California
Clinical Professor of Dermatology and Pediatrics, UCSF-School of Medicine